Mental disabilities such as Autism or Down’s syndrome are taboo topics that are not often discussed within Eritrean society. However, many within the country are working diligently to raise public awareness about these types of disabilities and provide information about how to provide necessary care to those afflicted. Specifically, this is the work of the National Association of Intellectual/Developmental Disability of Eritrea (NAIDDE), formerly known as the National Association of Autism and Down Syndrome of Eritrea (NAADSE). Since our column focuses on development related issues, today I offer a glimpse into the work of the association, and discuss its ongoing efforts and challenges.

As I often pass by the NAIDDE office, one morning I decided to walk in and simply introduce myself (as I usually do). I was warmly welcomed by the manager, Mr. Assefaw Ghebru, who also provided an initial interesting introduction to the work of the organization. After our teatime we decided to make formal appointment with the president, and two days later, there I was, back at the association, meeting with Lt. Colonel Berhane Bocrezion. He is a very eloquent man who is also the father of a child with one of the aforementioned mental disabilities.

Thanks to the usual Eritrean hospitality, the interview was more of a shared discussion. Mental disorders are not frequently spoken about in Eritrea, and it can often be quite difficult to discuss them without encountering some backward judgments or misconceptions. Many individuals see themselves as having the answers to why one child was born with autism and the other was not, for instance. Thus, a key priority of the association is to challenge these types of ideas.

Indeed, the association was created to respond to the needs of parents who used to organize themselves informally in small groups to discuss and help each other. In 2006, parents became increasingly organized and they were officially recognized as an association after the first congress held on the 24th November 2010. As an independent, non-profit, non-governmental organization (NGO), NAIDDE’s aims include safeguarding and advocating for the rights and equal opportunities of individuals with mental disabilities. Although the association is still relatively young, it has already achieved a considerable amount.

NAIDDE’s priorities are access to health care and education, as well as increasing the general public’s awareness about disabilities. The association’s specific work largely focuses on children with Autism Spectrum Disorder (ASD), Childhood Intellectual Disability (CID), Childhood Neurological Origin, and other developmental disabilities. NAIDDE estimates there are between 30-40,000 children with these disabilities.

An important question that often arises, often also representing an initial challenge for Eritrean parents, is how to diagnose a child with mental disability? Doctors make the diagnosis and assessment; subsequently, the association will provide training, guidelines, and membership to parents. Nonetheless, Berhane explained that, ideally, the diagnosis should not be carried out by doctors but by specialists such as psychologists. Specifically, the association believes that these are not diseases, but mental disabilities. As a result, the assessment is “simplistic”, seeing a parent only receive the information on whether or not their child has a mental disorder.

Accordingly, the association works as a sort of a lobby group to ensure the voices of parents are heard by the authorities, such as the Ministry of Health, Ministry of Education, and the Ministry of Labor and Human Welfare. The latter extends financial support and provides facilities in terms of office spaces and materials, while the Ministry of Education provides access to education nationwide. Currently, there are nine schools with a total of 620 students enrolled. Importantly, access to education, despite being a right for all, requires that many factors are taken into account. Indeed, as Berhane stressed, “if I ask to give access to education to children in Mendefera, a child with cerebral palsy, for instance, she/he cannot sit down on the ordinary chair as any other pupils, plus the teacher, does he/she have the appropriate training?” These aspects are important to recall, prior to giving access to school. However, with parents organized as an association, they have managed to have their collective voice heard; new schools are expected to open for this academic year, including in Barentu, Tesseney and Ginda.

Additionally, as levels of societal awareness are growing, an increasing number of parents of children with disability have become unashamed of sending their children to school. For example, the Dahlak School in Asmara began with only 6 students with disability enrolled; however, this number grew to 57, only three years later. Enrollment and attendance ensures that these children receive an education, enables them to interact with others, and ultimately integrate with the community. Notably, the question of integration has long been a fundamental part of the awareness campaign organized by the association.

Community awareness is a significant topic of focus for NAIDDE. This takes us back to the initial point of discussion - cultural beliefs. In Eritrea, the level of consciousness or awareness by the general public remains low, even among key stakeholders. Often, they are only able to explain different mental disabilities in simplistic, cursory ways. As a result, the association organized two conferences on intellectual and developmental disability, within which members of the ministries mentioned earlier participated. These conferences are important platforms allowing the organization to promote and spread awareness to policy makers and specialists, as well as parents and local communities.

How does it work local level? Focusing on communities is a key priority for progress. Accordingly, the association organizes 6 days of training and education for parents in all 15 regions of the country. Beginning in March of 2015, the program has already expanded to reach more than 650 parents from Asmara, Asseb, Keren, and Barentu (among other areas). “We want all parents from all corners of the country to have the same knowledge, awareness and appropriate training to ensure the continuity of our work and the well being of these children,” Berhane said confidently. These grassroots workshops are, hence, illustrating a tremendous impact, as many parents that were not registered to attend eventually rushed to catch up during the middle of the training. Unquestionably, the training programs allow participants to speak freely, learn, and ultimately counteract many incorrect traditional beliefs, which often negatively affect parents and their children.

Which cultural beliefs undermining the well being of those children with mental disability are we talking about? You have probably heard of - and may even believe - some of them. These regressive ideas can have destructive effects to the concerned family. Often, the blame is placed upon the mother. For instance, within the Kunama ethnic group, there is a belief that pregnant women should not cross a specific river for the benefit of the future child’s health. If a mother ends up giving birth to a child with a disability, she is then blamed for having crossed that river. In another example, especially prevalent within the highlands, pregnant women are advised against going out in public, staying among groups of people, or attending funerals. The alleged reason is that the “evil eye” may harm the child. Thus, some man may say “I told my wife not to go to the funeral but she wouldn’t listen and this is what happened.” These ideas can have dreadful consequences, as Assefaw and Berhane explained to me, “we witness many divorces and separations when a child is diagnosed with a mental disability. Women are left alone and marginalized.” Moreover, some even believe that because of wrongdoings or lies by the grandfather, a “mergem” (curse) is passed on to this generation. There is no limit to these cultural convictions, as some may believe that it is within the family’s lineage. Subsequently, even a sister may have difficulties finding a husband. Unfortunately, due to these backward ideologies, many children are hidden inside the house, given neither care nor rights, while desperate parents will travel all around the country to find traditional healers, thus resulting in the loss of all their savings or living with debts. Therefore, the community assumes an important role in shaping these ideas, and the association is multiplying its efforts to reach all segments of society by offering training, public awareness campaigns and support. Of course, progress can be witnessed within society thanks to multiple TV programs on this matter, a growing educated society, and shedding of harmful stigmas (especially within urban areas).

The organization continues its work against stigma and discrimination throughout the country by expanding existent support and training initiatives. It is commendable to see the resilience of parents working on a voluntary basis, while other volunteers devote their free time to support the association. These efforts illustrate commitment and the idea of “haliot” (empathy), which makes Eritrean society beautiful. The association welcomes new members through a three types of membership (full, associate and honorary) for a 5 Nafka monthly payment. As a nonprofit, NAIDDE depends on its members, the financial support by the Ministry of Labor and Human Welfare, and also private funding (mainly from the diaspora). In upcoming years, the association is striving for more adequate diagnosis and assessment systems to be implemented, and increasing the availability of educational opportunities, such as vocational or arts training, recreational activities, and speech therapy. Last, an important point concerns access to health care. NAIDDE highlights that due to frequent illness in children with mental disability, parents often bear a heavy burden in terms of time and finance. Therefore, offering a type of “priority” card and free access to health care nationwide could be a viable and useful strategy moving forward.

“Raising consciousness for equal opportunity” is the vision NAIDDE is striving for.